Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

I am disturbed by one particular post on CA (well lots more than one, but this one struck me as particularly crass)

Come on guys, get ordering and support Charlie's fight even more. Let's show the world how loved Charlie and Connie and Chris are. You can support them through Charlie's shop and buy some lovely keepsakes and supporting items. WHO DO WE LOVE ?💙💙CHARLIE GARD💙💙 SAVE CHARLIE GARD💙💙💙. Buy from Shop.charliesfight.org

Keepsakes? A keepsake is something you buy or make to remind you of a happy time or occasion with a loved one, or a memento mori of a loved one. Not a keyring or wristband to remind you of someone else's terminally ill baby. It sickens and baffles me why people are going mad for these items. Phone cases with a photo of the terminally ill baby on too. I honestly don't get it. Donate if you like, but merchandise

Sorry I don't think I've been absolutely clear, I'm not criticising GOSH they clearly do an amazing job I'm just saying there could be lessons learnt from this perhaps (agree poorly worded email has probably fanned flames) and although it may have always come to this regardless, there are always things you can reflect on and think I could have done this/if I had done that... critical reflection is so important in improving practice.
GOSH may have done every single thing perfectly and be completely above reproach. But I think it's unlikely there aren't lessons to be learned somewhere. And certainly a repeat of this situation should be avoided at all costs in the future, for all interested parties.

I wish everyone, and especially anyone in CA, would watch the brilliant Hospital programme.

Just to see how decisions are made and the amount of discussion and time and people that are involved.

Copied from the previous thread for you, *WriterWannabe"

I believe you implicitly; in particular I get what you're saying about the delicacy of the relationship between medical staff and parents, and especially your remarks about what this must be doing to the staff in PICU

However the trouble seems to be that this has gone so far, and for so long, that the parents will no longer accept anything at all except what they want to hear. Nursing staff, consultants, lawyers, the judiciary, pastoral advisers ... they'll all be wrong unless they agree to what the parents want

I'm certain it was done with the best of intentions, but I can't help agreeing with he PP who said GOSH must bitterly rue the day when they agreed to "a bit more time to say goodbye"

Interesting article from BBC here on "parental rights": www.bbc.co.uk/news/uk-40600932

Excerpt:

Parents, it is generally agreed, are allowed to choose what happens to their children.

Of course, parents may make good or bad choices, but they have the right to make those decisions, whether that is about their child's diet and physical activity, their name, what school they go to, what religion they are raised in or what medical treatment they receive.

Professor of medical ethics at the University of Oxford, Dominic Wilkinson, says: "The principle is that if parents' decisions risk significant harm to their child then they should not be allowed to make those decisions. But the state doesn't intervene every time parents don't make the best decision."

The concept of parental responsibility is set out in law. The Children Act 1989 describes it as "all the rights, duties, powers, responsibilities and authority which, by law, a parent of a child has in relation to the child and his property."

If a public body disagrees with those choices, they must go to court in order to override this parental responsibility.

A judicial review is used to examine the way a public body, court or government department has made a decision, and to see whether they acted in good faith based on all the evidence available to them. They are costly, labour intensive and are only about process rather than the decision itself - a bit like a grievance in employment law but magnified.

And certainly a repeat of this situation should be avoided at all costs in the future, for all interested parties

Sadly, I believe it's probably too late ... this particular Pandora's Box may prove impossible to close

That is what i fear too puzzled :(

Thanks @TartanDMs

Writerwannabe83 The parents have said before that they are "excluded from meetings". They seem to feel they should be present at all clinical discussions.

We had one little boy with us for about 18 months (he had a complex syndrome) who needed one to one Nursing and thankfully his parents were absolutely wonderful and supportive. They did come to a lot of the meetings but they were 100% on the same page as us and it made things so much easier. He was eventually transferred to GOSH for pioneering treatment and they effectively gave him his life back.

On the other hand we do get the 'expert parents' and it's hard because during training we are told that nobody knows the child as well as the parents and their opinions and thoughts should always be taken seriously and be paramount. Sometimes it's really hard to have to tell them that in some circumstances, despite being the baby's parents they don't know what is medically best for them. Some of the parents I've come across during my time.....they don't want to hear anything you have to say, they genuinely believe they are right and we are wrong and try and block everything we want/need to do. It can get very frustrating!!

Just to be clear, in the submissions given by GOSH'a counsel, she stated that the hospital was "forced" to return to court as the parents threatened to apply for a judicial review based on the "new" evidence - this is why there is so much stress on it being "new" and the judge was trying to ascertain when the parents became aware of it (viz mother's long letter that she passed to medical team which allegedly contained this "new" evidence). That is why he told the parents that he would not rake over the "old" evidence again - it is only new material that is relevant.

Reading between the lines, clearly JR we threatened very early on - probably a few days after the final decision. Then the letter was sent by mother. The hospital then had two choices (a) be on the back foot and let the parents steam ahead and make the JR application or (b) agree with them that current application should be made and try and keep engaging with them whilst disputing that the evidence was "new".

What has happened is that rather than their being a very specific analysis of who said what to whom when and what the parents genuinely and legitimately understood (which all seems a bit unclear), the judge felt compelled to hold the meeting and to allow the American expert to examine Charlie as, due to the shifting nature of his evidence and the fact that he has not examined him before, he could not genuinely make a finding either way (he can only determine matter and on the basis of the evidence before him) that it is in Charlie's best interests to have life support withdrawn etc

So - to be fair to GOSH, unless they had immediately withdrawn life support without giving the parents a chance to prepare and say goodbye (totally inhumane), then this position would always have arisen as the parents were clearly desperatly scrabbling around for new evidence

Ah found you all! Topsy turvy day after bad night, sleep during day now so awake it looks like another sleepless night! Thanks muckypup for new link, I'm lagging tonight!

Fantasy, I thought it was only about the money too, right up until this week!

@cavemum
closing off threads like that is a blast bt I always like (when I use to close off numerous 5:2 thread) is adding a useful link or thought to each of the last ten posts - makes it more of a game

What happened between them saying at the first Court hearing, all those months ago, that he had no quality of life, and now, when they seem to think he has, isn't brain damaged etc etc. Back then, they seemed to have a fairly good handle on his state. It's a bit of a shock to see how they've changed.

Is it because they've raised all this money? Surely not.
Is it down to CA? That's got to be part of it (and that's part of why I have no problem with people taking the piss out of them).
Is it because they realised that the US doc won't treat Charlie if he's as bad as he is, so they've taken up that position in the hopes that the doctor will just believe them?

Now they actually believe it themselves, or do you thik they know the score perfectly well?

Writerwannabe83 It's a long time since I've worked in ITU, and it wasn't paeds but I well remember that frustration!

@Ta1kinPeace Ooh, like a Thought for the Day?! I shall have to ponder on some words of wisdom for the next thread I close

I just want to say thank you for these threads. I don't have time to keep up but I've been dipping in and out since they started. Posters here have been really good at providing actual information while remaining calm and empathetic. This is probably one of the best sources on the internet for up to date info on this case.

These, and the Grenfell threads, have made me really proud to be part of MN.

THANK YOU!

Claims about new evidence, 10% chance, threats of judicial review etc all came about very shortly after Trump tweet and transatlantic mercy mission by pro-life fundie pastor and his lawyer friend.

I haven't had time to catch up on the last couple of threads but I have been dipping in and out.

My opinion on this situation keeps changing but one thing hasn't changed is my opinion of CA. Some of their member are truly despicable! I too saw the post "touting the tat" and it just seemed so crass to me, also along with the total denial of the threats that have been written is laughable. Truthfully if this treatment goes ahead the barmy army will fade into the background as they will get bored!

What happened between them saying at the first Court hearing, all those months ago, that he had no quality of life, and now, when they seem to think he has, isn't brain damaged etc etc. Back then, they seemed to have a fairly good handle on his state. It's a bit of a shock to see how they've changed.

The parents' position ks that at the time they made these statements they didn't think that Charlie's condition was treatable. Now the "new" evidence shows that it is (according to them)

Well CA have just blocked DH.

He clicked join and his answers to the three joining questions were -

Where did you hear if CA?
Daily Fail.

Do you support Charlie's case?
Yes. I think he should be allowed to die with dignity

Will you share like tweet etc?
No.

Yep. They've blocked him.

Obviously he didn't intend to harass and didn't know any of what's been happening with the group. He got riledup about a psychic medium joining them and wanted to intervene

Umpteenthnamechange, apparently you do not get to join unless you support fully.

I got blocked and I was not even a member lol, Ithink its because they were picking up on my posts in other places defending Gosh.